Friday, January 07, 2011

What Happened to Two?

Note: I have struggled this way and that to write this blog. It's imperfect. It may offend. It is not meant to. I have decided to publish it because in here, the mess that follows, is a point I really want to make.

Coming through the door I was excited to see the new elevator. I wondered if it were quicker than the old one, which ascended slowly as if it, itself, had a fear of heights. The doors opened with a welcoming whooosh and I was on. The ride was smooth. And it had that 'new car' smell and, I guess, that's appropriate. What was nice was getting back to the office and seeing people. Saying, 'hey' and doing things that I really needed to be at the office to do.

The elevator had changed in other ways too. I didn't even notice because I don't need to notice. The old elevator marked the first floor up, where head office is, "2" (are you following me?) but this one marked head office as "1". Big deal. I knew where I was by feel and simply got off.

When it came time to leave, I waited for the elevator with Joe, who wanted the excitement of a ride in the new car. He was jokingly practising his 'ooohs and ahhhs'. The door opened and a woman with an intellectual disability was on the elevator. She is a bright and capable woman, one who I sometimes forget has a disability at all. She glanced over and saw the number '1' shining on the panel and panicked. She didn't know where she was. Even though she'd seen the little anteroom that the elevator opens into on that floor a thousand times, the number didn't say '2' she gets off on '2'.

Fear crossed her face. Real, deep down, in the bone fear. 'I don't know where I am,' she said her voice full of anxiety. Both Joe and I reassured her in calm voices that she was at head office and that she could just step off and she'd be where she wanted to be. But she couldn't step off. It was wrong. She gets off on '2' not '1'. I asked her to slow down her breathing because she'd gone pale. She listened for a moment to my voice, focused on who I was ... I work at head office ... this must be head office. This took a fair piece of time. She got off, quickly opened the door behind me and saw that it was head office and she was so relieved that she had tears in her eyes.

We rode down in silence. Not a single 'ooooh' not a single 'aaaaah'. On the way home I thought again about intellectual disability and how little it is understood. People get my disability, they see the wheelchair. The know automatically that my life needs adaptions. They know automatically that I will need cut curbs and ramps and grab bars. Nothing needs to be said. People with intellectual disabilities, however, because they are capable of so much physically and often a fair bit verbally, we can forget that this is a disability that has a huge impact on how someone operates within the world.

People may get impatient with me every now and then as they wait for me to manoeuvre my wheelchair around an obstacle or up a ramp. But mostly they understand. For those with intellectual disabilities, however, the urge to impatience is huge. People forget that even a slight developmental delay has huge ramifications that require adaptations and patience and time. Processing doesn't happen quickly. Sequences aren't naturally connected. Abstract concepts get lost in translation. Elevators that say 1 instead of 2 are a huge, incredibly difficult, problem.

Yet I hear impatience in the voice of care providers. Both parents and staff. Like someone is purposefully having difficulty with learning, with doing a task. Even a task that's been done a thousand times can become impossible in the face of distraction or stress or when it's part of multiple demands. This isn't an 'act' it's dealing with a really major difficulty.

Should someone see me, in my wheelchair, at curb that I need to get up and yet there is no curb cut, they will understand my frustration. They will see me rolling back and forth as a means of looking for a way up. They will see the unfairness of the situation.

Should someone see a woman with an intellectual disability become confused because of changed numbering or lettering and become hesitant getting off an elevator, they will most likely become impatient and maybe even rudely say 'get off for heaven's sake'. Yet her disability is greater than mine. I can identify the problem immediately, I know what the solution is, I can safely move around and survey the area looking for an alternate, I know what to do if there's nothing to do. She, however, had none of these skills. Oh she can walk, where I can't. She can enter and exit an elevator more easily than I. But she lives in a world impatient with her confusion. I live in a world where my frustration is, if not understood compassionately at least it's understood intellectually.

I'm glad we were there when the door opened. I'm glad we both saw her confusion as real and her fear as reasonable. Her world had changed without explanation. We could calmly reassure her. We could use other cues to get her to recognize her environment. We knew that she wasn't willfully holding us up, that she wasn't 'attention seeking' or faking it. She lives with a significant disability in a complex world - that needs to be honoured and understood. She was cognitively confronted with an uncut curb. Frustration, fear and even anger would be justified.

People with intellectual disabilities are often misdiagnosed as 'lazy' and 'stubborn' as 'attention seekers' and 'self-saboteurs'. That this misdiagnosis happens with those who supposedly know them best is tragic. We forget, easily forget, the impact that disability has on a life, because those of us with them work very, very, hard (oh so very hard) to make it look easy.

My son has an intellectual disability as well as a physical disability that is not always easily noticed. He "appears" typical, is a good looking, tall 14 year old boy. I have often said (to those who understand) that having disabilities that do not show immediately, like a wheelchair or a genetic syndrome usually do, can sometimes be a challenge in and of itself. You explained it much better than me.

My son would be completely reliant on the visual cue of "2" and would have that same panicked look and confusion. He would not have been able to process the difference quickly enough and may very well have gotten lost in that same situation. Panic will completely halt the already-slowed processing and I fear the danger this could pose for him. So, yes, those with intellectual disabilities or not easily identified disabilities face the same "curb cut" challenges. I think you illustrated it perfectly and have no idea why you think your comments might have offended.

Wonderfully said. I agree that this is a brilliant way to describe intellectual disability and should be included in training materials. In 30 years I have never seen it put in this way and it may be the most helpful description I have seen yet. Thank you.

Dave, you are a nice and kind person. I wish there were more people who could see others as simply people. We all have challenges, but some challenges are harder for others to accept and understand. You seem to accept and understand everyone you meet.

Oh Betty, I wish I were the person you think I am. If you ever heard my internal dialogue, an idea that chills me, you'd discover that I have as much difficulty with patience and understanding as everyone else. I just try to notice it and to stand guard against the impulse to judge.

I can see a couple of lines in your post that maybe you were thinking of when you were afraid you might cause offense -- but in overlooking those, I agree with your underlying point. I'm deaf and also have attention deficit disorder. Sure, I do sometimes encounter people who don't really seem to grasp what deafness means -- sometimes with frustrating results (such as the time one man kept trying to make me use the phone by myself even though I explained many times why I couldn't--it was in a context where there was no teletext machine, and was in the days before video phones) and sometimes merely with amusing results (there was the woman who could not understand why I needed her help to knock on the unlockable home bathroom door to see if anyone was in there until I asked how she suggested I tell the difference between silence because there was no sound to be heard and silence because I could not hear the person saying "I'm here" ...!!)

But I think as an overall rule most people have more difficulty grasping the challenges posed by my attention deficit disorder--even the people in my life who are aware of it. They see me do certain things very well, then they see me have a lot of difficulty doing certain things that THEY think are basically the same as the things I do well. And they can't understand why, so they may assume I'm being lazy or that I don't want to do well with these other things. And can't grasp that, when you have ADD, then NO these two activities that LOOK the same from their perspective do NOT require quite exactly the same set of skills--and that's where the difficulty comes in.

Among other things, my ADD makes it very hard for me to really do much housekeeping on a consistent basis. One time I managed, after much struggle to get myself focused, to really wash the sink clean. Other things in my apartment were still cluttered, yes, but I had done this one thing that was hard for me and was proud to have accomplished even that much. But when I showed my parents what I had done, they could not celebrate this moment with me. Instead, they had to criticize everything else that was still left undone in the apartment. And that still hurts. My ADD was not diagnosed until I was an adult, and I think perhaps partly because of that they have difficulty grasping it or even believing it. Because of moments like this one, when they could only criticize instead of celebrating, I rarely reference my ADD when I am around them.

For the record, 99% of the time they are very loving supportive and encouraging and believe in my capacity in many important ways and are a big part of why I've succeeded at the things I've succeeded at. But when they fail to do this the other 1% of the time, it still hurts.

Thank you, Dave, for this reminder. Those of us who work every day with Adults with developmental disabilities get used to these small things that people have found help them cope with the world. Yet we often get impatient with these things or forget to make sure that new staff understand how important these things are. Example; yesterday a "relief staff" was filling in for regular staff who was ill. She stopped a man who is affected by Down Syndrome, who uses non-verbal communication as his main form of communication, from preparing his tea in the manner in which he always prepares it....which includes filling the tea kettle to the brim with water, dumping it out and filling it again before turning it on to boil. This 50+ man has been making his own tea for years and for him this is how it's done. Is there any real harm in dumping the first kettle-full of water down the drain? This has, believe it or not, been the topic of a few meeting discussions. I understand that environmentally this is not the best method for making tea, but I, personally, have pledged to use less water to make up for this man's water waste to spare him the indignity of a behaviour modification program for this small issue. When this staff stopped him from emptying the kettle he completely and visibly shut down and didn't complete his routine. The staff even made the man his tea, which he promptly dumped down the drain. He went without his tea yesterday (not to mention what he could have been thinking about himself, all because we "veterans" didn't think to tell a new person to the environment about this important fact). Your post today is timely for me and I will pass this one along.....as I do more often than not. Have a great day.

Is it possible for Vita to put a note in the elevators to say something like "Vita is now located on the 1st floor" or "For Vita, press 1"? I realize that for the reading impaired, it might not help but it might be a start.

Dave, I personally am not disabled (nor am I close to someone who is), so I'm probably not the ideal commenter, but I don't find anything about this post offensive.

It does make me think, though, that for me it is harder to anticipate things that might make life difficult for an intellectually disabled person, as opposed to physical disability. That is, the standards needed to increase accessibility for most physical disabilities seem fairly straightforward, but there seems (to me; but maybe I am just ignorant) to be a lot more variety in how intellectual disabilities might present themselves. So, to me, it seems more difficult to anticipate and prevent the moments such as the one you described.

However, I do take the point that, regardless, we can change how we respond to those moments.

Thank you for this very important discussion. To many people that change in the labelling of floors is insignificant - we notice, adjust, move on. But for this woman it is a major cue. I am so glad that you and Joe were there when she encountered this major change in her environment.

One aspect of empathy is that we have to understand the person's world as they understand it. IF (ant that is a big if on purpose) we (staff) are truly open to understanding a person's world as they understand - then there is no dumping a man's tea kettle down the drain as in coffeetalk's example. When I read your post Dave, I was not angry - when I read coffeetalk's example, I was instantly furious! where do we get off doing this to people!?!? It is about the misuse of power and lack of empathy.

So is that the case with the mislabled elevator? We can see it as an oversight but people knew that people with intellectual disabilities would be using that elevator. Just a query that I am putting out there.

I learned when my son, who has Down syndrome, was very, very young, that giving him processing time was extremely important.

I also noticed that, when he's in the middle of doing something, he has to finish it before he moves on to something else.

I talk too fast, move too fast and sometimes just have to stop and count and breathe when I realize I'm trying to rush him. What's been interesting lately is that he's been telling me - vehemently at times - that I'm interrupting him. I just love it that he now can bring that to my attention.

I'm sure the elevator button would have confused him. I only hope that when he is in a situation like that, that there will be someone like you around to recognize it, Dave.

It's just not something most people would understand. I remember his speech therapist when he was probably two years old had trouble waiting for his response sometimes and would speak for him. And she was wonderful and very experience - just not perfect. :-) We had a recent experience with a very kind neighbor who was trying to get him to do something before he was ready.

I know some people think parents of kids with Down syndrome are delusional when they talk about what a blessing it is to have a child with DS. I think one of the things that makes it such a good experience is the fact that you do learn to slow it down a bit, develop a little more patience - which can provide a different perspective on life in general.

Not sure if that makes sense. I'm multitasking - which I don't do all that well ... and should learn to not attempt.

Dave,I think you made an excellent point, and it came across just fine. Give yourself some credit- you are a terrific writer, and your thoughtful and mindful approach shines through.

I loved yesterday's post also. I think it is the beginning of a beautiful legacy. One day, a trainer will be teaching a class, and they will say something like " I was trained by so &_so, who was trained by ____, who was trained by DAVE, who was a pioneer.

Thanks for the post. Love your writing--follow your RSS feed daily here in Milwaukee Wisconsin, although I was born and raised in Toronto and still have family there. I am printing this blog post and will use it in my Pediatric Nursing Class at Marquette Universtiy this semester. I have a 15 year old with Autism who remembers what floor offices such as the dentist, doctor, etc are. A floor change like this might well have lead to similar results.

Excellent post. I am an ally to someone in my workplace on the autism spectrum, who has chosen not to "out" himself, making it worse in so many ways. I think people would be far, far easier on him if they knew and he let everyone know; but of course, like you say: that is obvious to me. He believes it would make matters worse. To him, acknowledging disability is even more terrifying than simply being regarded as a creepy weirdo. The shame of disability keeps him silent.

I do my best to defend and befriend him, but that is all I can do without actually outing him, which he doesn't want. *sigh* It's a messed-up situation, no doubt.

It is really something that you wrote this, just as this situation has been preying on my mind, so thank you! (found you thru Onyx Lynx's link!)

Thank you Dave, my son has now been diagnosed with Developmental Co-ordination Disorder in addition to all his other health problems. He doesn't have a learning disability but I have to keep reminding myself that even if he has done something properly ten times he might forget how to do it the next. Santa gave him a bike for christmas and I am currently trying to teach him to rider it. Very frustrating and I am learning that I am not as patient as I thought I was.

You assume that people understand enough of what disability means that they would accommodate him "if they just knew." But this does not always occur, particularly so when the disability is something that is not really that well understood. Some people, for example, accuse autistic people of simply using their autism as an "excuse for being rude."

Just because someone has made a tactical decision that silence is wisest, at least for the time being in a certain context among certain people, does not necessarily mean that he feels any shame about disability. Gay people who are closeted at work (and trust me, many still are) don't stay hidden out of some sense of shame ... some might, but many simply fear for their jobs or the treatment they might receive. And yes, some might fear wrongly, but other DO have a more legitimate basis for their concerns than you seem to realize. Just because you may be supportive, welcoming, and accepting doesn't mean that others will respond the same. Unfortunately, not everyone thinks like you or like others among Dave's readers. It's the same with those of us who have disabilities that are maybe not immediately visible or "obvious" ... and who might choose, in certain contexts, not to reveal some of our disabilities to some of the people we interact with. Please don't project your assumptions onto us. Please just continue to be supportive of your co-worker--INCLUDING being supportive of his right to choose what feels right to HIM regarding whether it is safe or helpful to be open about who he is.

And here I am, nearly crying. I guess you could say I have an intellectual disability. No one has, I suppose because the definition for that here is based on IQ and I can do the tests well enough, largely because tests give you instructions. I don't think I'd get stuck with a change in an elevator like that, but I'm pretty sure it would drive anxiety up. My problems are because of (progressive) brain damage. (It's left me physically disabled, too.) I used to be going to school for an engineering degree and now I occasionally have trouble working the microwave. It's been a really hard change, not least because I lack the capacity for understanding the changes my abilities in a timely way. For example, it took nearly 6 months of having trouble handling mail before I realized this was a problem.

Some cognitive problems can be hard because the problems themselves make it difficult to understand and/or explain the problems themselves. I can understand that other people can't imagine themselves in a position like mine. I couldn't have imagined this, either (and now I can't imagine before). I figure that makes empathy and understanding or even just patience hard. I guess the whole "invisible disability" thing doesn't help, either. I mean, if I look "normal", I should be able to think normally, right? Sigh. And then the very trouble itself prevented me from being able to talk about problems for a long time and, yes, even now can make it very hard to say what I need at the time.

I hate the assumptions. I hate how some people presume since I can do some things well, I must be faking any difficulty. I hate how some people, who have caught me having trouble, presume I can't do anything and are condescending. I can understand why my cognitive problems are hard for people to "get". I can't understand why people have trouble understanding that some things I can do fine with, others I have trouble with sometimes, and still others I trouble with always. I think that's silly. Everybody is like that in some way, surely, with some things coming to them easily, others not so much, and still others being beyond their grasp. I don't understand why it seems to be so hard for people to "get" because in some ways they've "gotten" it already! And I don't think my lack of understanding this is due to my condition.

It's really hard. For me, at least, yes, the cognitive is much harder than the physical. Worse, of course, is the prejudice and the judgments -- that I must be weak in all areas or faking and lazy. Seems it's nearly impossible for anyone to understand that I can recite (and understand, possibly use) formulas from trigonometry and calculus but can't pick out dinner. (I don't have a diagnosis of intellectual problems but testers generally think my cognitive problems are due to anxiety rather than realizing that the reverse is more true -- that, like anyone, when forced to try something beyond my ability, I get stressed. Fair enough that the stress probably doesn't help, but it's not what starts the trouble. More like the woman you wrote about. Everything goes swimmingly until something turns things into "wait, what am I doing now? what's going on?" and panic sets in, the world being swallowed up in confusion.) I really don't like that there's no place for me. Seems I'm either too disabled or not disabled enough. And I don't think I've found anyone who can understand that sometimes I can't "want" but can do, sometimes I can't do but can want, and sometimes I can do both or neither. Yes, it's really hard. I wish more of the people around me recognized that.

(Sorry for so long a comment. I tend to have trouble changing tasks. Among other things, it makes for a lot of rambling.)

Hi Dave,Long time reader, first time commenter. There is something in this post which has been preying on my mind ever since I read it. I’m talking about your statement that “it may offend”. Forgive me if I’ve got hold of the wrong end of the stick here - I think what you’re referring to is the way you talk about the woman being unable to deal with the situation as well as you and Joe did, like it’s a bit insulting to say so.Here’s what bothers me – if I say “Dave needs to use a wheelchair because he can’t walk very well” that’s just a statement of fact. It doesn’t have anything to do with your value as a person, it isn’t an insult, and it doesn’t change the fact that it’s a problem mainly because the world can’t be bothered to accommodate you. Yet, we get all uncomfortable about making equivalent statements about people with a learning disability. “This woman needs more time to think because she can’t solve abstract problems very well” is surely directly equivalent to the statement I made above about Dave and his wheelchair. If we believe that to come out and say that a person isn’t very “academically bright” or that they “can’t do (whatever)” is an offensive thing to say, aren’t we just buying into the myth that a persons worth is measured by their capabilities? “John can’t understand bus timetables” shouldn’t be any more insulting than “Jane can’t make a soufflé”.I realise people do use words for learning disability as a horrible insult, but you’re clearly not doing that.Sorry if I’ve missed the point but this worries me.Best wishes, Gill in England.

I think you said that really well. Our society in general tends to be very impatient with each other, without considering the unseen circumstances that may cause another to act in the way they do - disability or not. Thank you.

Thank you for this. I don't care how much experience a person has with disability, we all need these reminders! (In fact, those who fancy themselves as experienced, often need the reminder the most.) I've been in a wheelchair all my life, as has my brother. I teach English as a Second Language in a middle school. Many of my students, besides their language needs, have various disabilities. I absolutely understand the need for patience, and I like to think that I generally am relatively patient. Certainly moreso with my students than most of their teachers. But, not gonna lie, I still fall short a LOT! When I have a million things going on in a full classroom, I can't always bring myself to slow down for the one who needs it, or be understanding to those who won't simply do what they're supposed to do. It's easy for me to be patient and kind in isolated moments, but in the middle of chaos, when I have a million other concerns that are also genuinely important, it's not so easy. I'm not afraid to admit that I need frequent reminders!

This is one of the really frustrating things for me as an autistic person.My father and I joined a karate dojo together. Dad's a middle-aged, overweight couch potato with high blood pressure. I'm young and fit-looking, but have hypermobility and motor planning problems. So, though we both tried our best, both of us had a lot of difficulty with karate. My Dad has poor flexibility and tires easily, but he's strong and has good technique. I also tire easily (not as much as him), have poor balance, and constantly have to stop and think about every movement.We did karate for about six months, but, despite explaining to them about my autism and motor issues, the senseis wouldn't accomodate me. One in particular seemed determined that I was not trying hard enough, simply because my performance was variable in a way that didn't make sense to him. I finally quit and switched to a mixed martial arts class for women only, where they individualize a lot more. Meanwhile, my Dad's still at our old dojo, and while sometimes he's annoyed by the sensei's attitude, he can manage.My Dad has said, and I think he's right, that probably a big part of the problem is that whereas they can see my Dad's limitations when they look at him, I look like a normal 21 year old girl.

I want to thank you for your post. Most people would not have taken the time to help out the woman in the elevator nor would they have understood. Most people would not have had a 2nd thought about your encounter. Or thought enough about it to post. Thank you for sharing your experience and your thoughts. Very well said.

Dave,I loved this post, I think often intellectual disabilities are viewed in a two-dimensional way, an "I.Q." People think this population can be listed, quantified, labeled, identified, categorized. People are more complex - three-dimensional. Cognitive issues impact perception and understanding of the world. Respect and understanding go so far in allowing people with intellectual disabilities to blossom.

With my daughter sometimes people (including her sisters and father) think they can short-cut her to a result, which frustrates her. She does not want or need a short-cut. She needs to think it through, and have some tools that will help her do that, such as a kind and loving guide who can talk her through an anxiety-triggering change.

I'm not sure how much you mean to us Dave. Your gift of insight helps. It helps in a huge way!

Of my 7 daughters, one has Aspergers Syndrome, one has an acquired brain injury, and one has Down Syndrome. Your words put me right inside my daughters' minds. Especially the 14 year old with the brain injury.What you said resonateded very deeply with me. I am going to print it out, and pass it around. Maybe it will help her boss at McDonalds understand why she sometimes stares at them blankly when they give her more than one job to do. Maybe it will help my hubby to understand that she is not being obstinate when it doesn't occur to her that things can be done more than one way.Once again, you have touched on something dear to my heart.God Bless you.

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Disability Pride

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About Me

Joe and I live in an apartment right smack dab in the center of Toronto. I have worked in the field of disability since graduating from university over 30 years ago. I became disabled a few years ago now and use a wheelchair when out in the world. For those interested, most of my books are available through www.diverse-city.com and if you are wishing to book a lecture or consultation you may do so by emailing daveandjoe@hotmail.com

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There are those who have affected the course of my work and my career. I wish to remember them here:

Stella Young

Manuela Dalla Nora

Bob Clayton

Viktor Frankl

Robert Sovner

Marsha Forrest

Terry Haslam

John Money

Susan Tough

Sol Gordon

Winnifred Kempton

I believe that we should speak often and well of those who passed our way and whose lives gifted us. Here in this space I wish to memorialize those whose lived lives in service to those with disabilities.